St Helena Online

Tag: disabled

UK hospital agrees to operate on severely disabled Saint girl – but only after judge denounces three others that refused

Nuffield Orthopaedic Centre, by Steve Daniels. Published under Creative Commons licence - click the pic to learn more
Nuffield Orthopaedic Centre, by Steve Daniels. Used under Creative Commons licence: click the pic to learn more

A Saint teenager with “catastrophic” disabilities is to be given a desperately-needed operation in the UK – but only after three National Health Service trusts REFUSED to treat her.

St Helena’s chief justice, Judge Charles Ekins, said it was “shameful” that three hospitals apparently could not afford to take her, even though she was entitled to NHS treatment.

The 19-year-old girl, who can be referred to only as K, has severe deformities in her arms, “useless” lower limbs, and severe spasticity – among other conditions. Her profound learning difficulties mean she can barely communicate.

She was due to sail for Ascension Island on 21 April 2015 to meet a dedicated medical flight, but the judge said it would too dangerous to send her with no hospital prepared to receive her.

Only after she had missed the boat was a place found for her at the world-leading Nuffield Orthopaedic Centre, part of the Oxford University Hospitals Trust. The centre has a reputation for taking difficult and expensive cases from outside its own area.

She must now wait until 11 May 2015 to leave the island – where she could not safely have the operation she needs to amputate parts of her legs and ease her enduring pain.

K was discovered by Paul Bridgewater, a newly-arrived social worker, living in Barn View in Longwood, a “care home” used mainly for elderly people.

Mr Bridgewater had her moved to hospital but she was moved back to Barn View, only to be re-admitted – malnourished and suffering a serious ring worm infection.

Her condition is so severe she has to be kept lying down.

The island’s Supreme Court has been given responsibility for taking decisions about K’s care now that her mother is ageing.

A solicitor in England, Michael Trueman, has been appointed to act on her behalf. It was through his efforts, and the commitment of a consultant surgeon at the hospital, Mr Tim Theologis, that a solution was found.

K’s operation was recumbent by a visiting surgeon on St Helena, Sergio Villatoro Bran. He advised removing both her legs from above the knees – bilateral supracondylar amputation.

The hope is that it will make her more comfortable and reduce the risk of a fatal infection.

Judge Ekins pointed out that a protocol with Britain allows four St Helenians to be treated by the NHS each year. He made a point of saying that K is a British citizen – interpreted by some as a way to interest UK media in her case.

In a judgement issued on 23 April, he said: “Three NHS consultants had been approached by the date of the RMS St Helena’s departure.

“None would undertake to admit K. A response is still awaited from the last enquiries made.

“The risk to K of embarking up upon a passage to the UK without a hospital to receive her is unacceptable.

“I cannot think that the decision to refuse to admit K to the trusts approach is a clinical one… it seems to me to be likely therefore that the decision in each case is resource based.

“If that is indeed the case then the situation is a shameful one.”

He said the urgency of the case meant he would have to send her to South Africa if treatment is available there – “a much less preferable option in terms of K’s welfare.”

The High Court in England would take over responsibility for her in the UK. It is not clear what legal arrangements could be made in a foreign country.

K’s mother has been praised by the judge for trying to ease her daughter’s suffering, but he said she was “getting on in years” and there were concerns about her ability to take decisions about her daughter’s needs.

Judge Ekins said she had “been active over the years in doing her best to provide K with such suplementary comfort as she has been capable of.”

In 2012, Barn View, conditions at Barn View were severely criticised in a report by the Lucy Faithfull Foundation. Most of the report – on alleged abuse on the island – was kept secret, but a draft version was leaked.

It said a 16-year-old girl – thought to be K – was sharing a room with a dying elderly woman at the home.

Allegations of a cover-up of abuse, and the governance of the island, are now being investigated by Sasha Wass QC. She is understood to have asked for information about Barn View.

Judge Ekins included politicians in his criticism of K’s rejection by the NHS.

He said: “For some time now it has been claimed that the UK’s economy ranks amongst the wealthiest in the world. It is boasted that the UK’s economy ranks comfortably amongst the largest ten economies in the world.

“Political parties of every hue claim that the UK NHS is or will be safe in their hands.

“The two former make it even more shameful that it is apparently difficult, if not impossible, to afford treatment to a young British citizen with such catastrophic disabilities who is entitled to be treated by the NHS in the UK.

“The latter of the claims referred to frankly rings entirely hollow.”

SHAPE waves starter’s flag for St Helena ‘Grand Prix’

Kart racers in Jamestown might be advised to wear protective clothing. Picture: Bengt Nyman
Kart racers in Jamestown might be advised to wear protective clothing. Picture: Bengt Nyman

Daredevil drivers are being challenged to race home-made soapbox karts through Upper Jamestown, in aid of disabled workers on St Helena.

Fundraisers at the island charity SHAPE have dreamed up the idea of the rally and hope to attract at least 20 competitors in home-made karts.

The Gravity Rush event is scheduled to take place on 16 June 2013 – the same day as the popular soapbox derby in Brackley, home of the Mercedes Formula One team.

Next stop, Jamestown? Racers in Sweden, by Bengt Nyman
Next stop, Jamestown? Racers in Sweden, by Bengt Nyman

SHAPE manager Martin Joshua said: “At the minute we are targeting companies and also anyone of the public that actually wants to create and ride their go-kart down to the Bridge.

“We contacted the Highway Authority and they gave us permission to use the highway from the AVEC centre down to the Bridge.

“There’s a lot we need to sort out. We are hoping to sell some sponge balls with buckets of water and people can throw them at the participants as they ride through to the Bridge, so it can be quite fun.

“To make it good competitive day we are hoping for at least 20 entrance fees.”

The organisers hope to be able to take over the Market building to lay on children’s attractions.

A set of rules has been drawn up and karts will be inspected before the start of the time-trial.

St Helena karters face a sharp right turn on to the Bridge. Picture: Bengt Nyman.
St Helena karters face a sharp right turn on to the Bridge. Picture: Bengt Nyman.

In the Brackley race, competitors have a straight run down the High Street… and into a pile of cardboard boxes, positioned bring them to a safe halt. Even so, some competitors take a tumble, swerving to avoid the boxes.

The road down to the Bridge in Jamestown is much steeper than the Brackley race route.

The Brackley rules set limits for the size of the karts and their wheels, and say no materials can be used that might shatter on impact. Fitting brakes is “strongly advised”.

Brakes will be required on St Helena karts.

The pictures on this page are from the Red Bull Rally in Stockholm, Sweden, where much bigger and more elaborate vehicles are allowed – and bigger crashes happen.

Anyone interested in entering the Gravity Rush should contact Martin Joshua of SHAPE – St Helena’s Active Participation in Enterprise – at shape@cwimail.sh.

LINK: SHAPE

SHAPE supporters walk to help island’s disabled into work

From Facebook: SHAPE (St Helena Active Partication in Enterprise) will be doing a sponsored walk with a difference from Whitegate to Rosemary Plain on 26 April 2013. The event is open to ALL who are fortunate to be involved with a special group of individuals within our community. The fund-raiser is designed to show that the work you do doesn’t go unnoticed, therefore a percentage of the monies raised will be used to arrange a coffee morning and pamparing session. If anyone is keen to sponsor anyone during this walk please contact SHAPE@cwimail.sh

FACEBOOK PAGE: https://www.facebook.com/SHAPE.St.Helena

SHAPE praised as advisers cite unknown scale of disability

The role of St Helena’s disability charity, SHAPE, has been singled out for praise by UK aid advisers.

But they say help for disabled people is “fragmented”, with too little knowledge about the problems people are coping with.

The success of SHAPE – short for St Helena Active Participation in Enterprise – shows the role civil society groups can play, says the report on the annual Development Assistance Planning Mission, which looks at the challenges facing the island.

SHAPE trains disabled people in craft skills at the old school building in Sandy Bay, and provides them with work such as making and selling jewellery. It has also set up a recycling service.

The aid advisers’ report, agreed with St Helena Government negotiators, notes a need for “a thorough analysis of the number of disabled people on island and types of disability/capability issues, linked to levels of disadvantage and vulnerability.”

The findings “will undoubtedly impact” on health and social services planning, it says.

It also says a contract for SHAPE’s services should be continued.

It adds: “Whilst provision for disabled people remains fragmented, we welcome SHG’s recognition of SHAPE as a front-line service delivery agency.”

The government also needs to consult on concerns in the community, it says.

SHG is set to policy on managing disability.

How a gift from a lost tribe helped island jewellery take shape

Close up shot showing "beads" of rolled-up paper, with some of the type still visibleEye-catching paper necklaces link St Helena with a lost tribe of bush people in Botswana. They are based on a piece of jewellery that was passed to the island’s craft enterprise, SHAPE, by Hazel Wilmot, owner of the Consulate Hotel in Jamestown. Her father had been a member of an expedition in the 1960s to record the tribe’s disappearing lifestyle. The story is taken up by Hazel’s sister.

map showing Okavango Delta and St Helena, with pictures embeddedCLICK THE MAP for more pictures

 by DAPHNE WILMOT

A couple of years ago, my brother and I attended the funeral of one of the last of the River Bushmen to roam and live a nomadic life in the Okavango Delta in Botswana.

1960s photo shows two men standing in dug-out canoe
river bushmen of the Okavango Delta: 1960s photograph. Click the pic for more

Their existence was well documented by Mr Clive Cowley, in a book recording his search for the remnants of this dying-out tribe.

The man who had died was well known for being the head of his village, deep in the Okavango, where very few foreigners ever went.

It was a sombre affair at the grave side, but the wake was well attended by many friends and long-lost relatives arriving from across the width of Botswana.

The only access was by dug-out canoes, or mokoros, as we call them. Gliding through the crystal clear channels of the meandering waterways, these few villagers gathered honey and wild dates from the palm fringed islands and fished with home-made nets. They lived a peaceful life, living in harmony with ways of nature that sustained their very existence.

Detail of a 1960s newspaper article on the "fabled tribe" of river bushmen
1960s newspaper cutting

At the funeral, I greeted many familiar faces and offered our condolences. During lunch, an elderly lady came up to me and presented a gift of a paper bead necklace. I was intrigued at the beauty and simplicity of the making of it.

She had cut strips of the Ngami Times newspaper (our local weekly newspaper) and rolled them to perfection, glueing them to make a final ball with a clear sealant. I thanked her and told her I would treasure it always.

Knowing that Hazel, my sister on St Helena island, was always looking for ways of helping others with little home industries, I packed this necklace and took it with me to St Helena, for her to give to SHAPE.

I am happy to see that they have perfected the technique, and that today they sell many beautiful necklaces, bracelets and trinkets of all sizes, colours and shapes.

So, the team at SHAPE had been inspired by the gift from Hazel and Daphne, but that was only the start, as LOLLY YOUNG explains.

A group of people sitting round a bowl full of paper for rolling
SHAPE staff and members at their base in Sandy Bay

We had the sample, but Woody (a member of the team) figured out how to make the beads. He cut a large paper triangle and rolled the beads very finely along a toothpick.

Ashley George became the main bead roller – very fast and efficient. Wendy Anthony, who is blind, threads the paper beads with other donated beads and makes the jewellery.

Wendy does the making at home. She also sells at Reading Sports (the biggest annual UK gathering of St Helenians) as a little sideline.

We use any paper. We started using TV guides, because of the colours, such as yellow and pink. Now we re-use glossy wrapping paper, and we are making the beads much smaller for a more sophisticated look.

And Daphne Wilmot has a message to pass on to readers:

By buying one of SHAPE’s necklaces, you will be supporting a whole industry – and helping others with special needs to help themselves.

  • Lolly’s use of Woody’s nickname alone is in keeping with a strong cultural tradition on St Helena. Everyone has a conventional name, but they don’t necessarily have much use for it. Perhaps one day, someone will research the stories behind the names, which are often passed down within families. 

LINKS:
SHAPE:  St Helena Active Participation in Enterprise
SHAPE on Facebook
IN GOOD SHAPE – feature

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